Video: Cheerleader’s family speaks

Joanne Kuleba thought that her daughter had done all her homework when she decided to have plastic surgery and chose a surgeon to correct a congenital defect that left her with asymmetrical breasts and inverted nipples.

What no one knew was that 18-year-old Stephanie Kuleba had a rare, genetic condition that caused a fatal reaction to the anesthesia. Now, Stephanie’s family wants to make sure it doesn’t happen to others.

“We did extensive research on plastic surgeons within the area,” Joanne Kuleba told TODAY co-host Matt Lauer Monday in New York. “Her plastic surgeon came highly recommended to us. It was an amazing facility — state-of-the-art facility, state-of-the-art facility surgical suite. He was a board certified plastic surgeon. We felt absolutely confident that this was the right decision.”

Stephanie’s family and fellow cheerleaders in Boca Raton, Fla., emphasized that the young woman whose nickname was “Sunshine,” was not a vain woman who wanted larger breasts.

Rather, she was embarrassed by a defect she was born with and wanted to correct it.

“She had a birth defect, and she was extremely self-conscious about it all her life,” her mother said. “It became more and more an issue for her as she grew into her teenage years.”

She talked it over with her family, including her father, Tom Kuleba, who is divorced from her mother.

“We were supportive of her decision,” Joanne Kuleba told Lauer. “Obviously, it was something that was so important to her that she made the decision and it was critical for her. The timing was impeccable because she was off from cheerleading, she was about to go off to college, and it was the right time as she made the next transition in her life.”

It all seemed so routine, and no one thought that there would be a risk involved. The condition that the family believes killed Stephanie is a very rare genetic disorder that causes a reaction to common types of anesthesia.

The reaction is called malignant hyperthermia. It causes the patient’s temperature to spike to 110 degrees or higher. Salts precipitate out of the blood and organs collapse, leading to death.

Inadequate care?
There is an antidote called Dantrolene that can reverse the effects of malignant hyperthermia if administered in proper dosages in a timely fashion. An autopsy report on Stephanie has not been completed and the cause of death has not been officially listed, but the family’s attorney, Roberto Stanziale, said that her doctor, Steven Schuster, and anesthesiologist, Dr. Peter Warheit, administered one dose of Dantrolene when at least eight doses of the drug were required.

The surgeons called for an EMS service to take her to a local hospital about an hour and 45 minutes after the surgery began. She was pronounced dead about 24 hours later, on Saturday, March 22.

Neither doctor agreed to be interviewed, but Schuster’s attorney released a statement saying, "Dr. Schuster is devastated by what happened. He is shocked, he sends his deep and heartfelt condolences to the family for this very unexpected event."

The statement went on to say, “Dr. Schuster did everything he could and responded to her in an appropriate and timely fashion, in accordance with the standard of care in the operating suite."

“That is absolutely ridiculous,” Stanziale told Lauer. “There is a standard of care how you treat a person that you believe is going into malignant hyperthermia. These records show that these guys did about one tenth of one percent of what’s supposed to be done.”

Stanziale said it is too early to say whether the family will file a lawsuit. Under Florida law, a plaintiff must obtain an opinion from a medical professional stating that there is a likelihood of malpractice before a suit is filed, and the family is still gathering information.

But the attorney was scathing in his criticism of the clinic and the doctor who operated on Stephanie.

“They might just as well have had a couple of auto mechanics in there,” he said. “Dr. Schuster’s attorney said they lived up to the standard of care. I’ve spoken to so many experts and all of them have told me the same thing: This girl did not have a chance in that clinic. They were not prepared, didn’t have the people, didn’t administer the right medicine.”

Tom Kuleba said the family wants others to be more aware of the risks of even routine surgery.

“Unfortunately, our family is the victim and poor Stephanie has paid the price,” he said. “There’s such a lot of information that is provided to you when you get into this setting, [but] it’s more or less being handed a form and being told complacently that there’s a risk. There are so many things that need to be brought to people’s attention with regards to the options you might have.”

The family has started a Web site to raise awareness about malignant hyperthermia and to memorialize a young woman who dreamed of becoming a doctor so she could do what had always come naturally to her — helping others.

“She honestly was one of the most selfless people I’ve ever known,” said her older brother, Chris. “Growing up when we were young, it honestly made her happy to make other people happy. Her friends have told me that she looked up to me and idolized me, but, honestly, I looked up to her. She taught me how to live life.”